Today is Rare Disease Day, when we lift up the stories of the 300 million people who live with more than 6,000 rare conditions. This year’s theme focuses on bridging health and social care, alleviating the heavy burden on people who coordinate medical, social, and support services for themselves and their loved ones.
The National Institutes of Health runs an annual symposium to bring together researchers, advocates, and people living with rare disease. In 2015, I attended and wrote the following, which resonates with this year’s theme of making it easier for people to live, work, and play even as they seek treatment:
In the afternoon, I toured the NIH Clinical Center and the guide pointed out that researchers’ labs were built to be across from or next to patients’ rooms. I didn’t snap any pictures because it felt too intimate, but imagine neighborhoods of rooms devoted to a certain condition — all the clinicians, patients, and family members sharing a common hallway. It was beautiful, both in vision and in reality.
The one place I did take some photos was the atrium.
It soars 5 stories up, but not in the way that Michael Graves famously mocks as “a showplace to hang plaques honoring their donors.” No, not at all.
All the patient and family services are arranged in a ring on the first floor so it’s easy to get all the “business” of a visit taken care of and then sit down in an arm chair or on a couch to have coffee or lunch. The chairs and tables are sometimes moved aside so that a choir, band, or quartet can play. The music fills the space, luring patients and clinicians out of their rooms to listen, at every level of the atrium. Amazingly, it was specifically designed to become a concert hall. The acoustics are apparently very good and (I love this) patients can wheel or walk out of their rooms and remain somewhat out of sight on the upper floors if they care to, even as they have a front-row seat.
So imagine: patients, families, and researchers all together at work or at play. Drawing blood, monitoring vital signs, and listening to an aria, all at the same time, dissolving the boundaries between them.
For more, please see my other posts about rare disease.